[ Post a Response | 22q Deletion Interest Board ]
Posted by janine --Previous Message--
on 3/1/2007, 3:13 pm, in reply to "Re: experiences wanted"
84.68.175.231
Megan, I am so pleased to read your email and to hear from someone who is an adult with the 22q11 deletion. It gives such hope that everything might be ok for our son and I would really like to hear if you came to the medical professions attention for any reason throughout your childhood. Many of our doctors have told us that lots of people with the deletion never come to medical attention but we are not sure how common that is?
:
: --Previous Message--
: Dear Folks, I have a 22 month year
: old son and I just found out aftr he
: was born two years ago that he had
: this 22Qll deletion. It was a relief
: because I had also found out at 28
: when I had him that I also had the
: same genetic disorder. I had trouble
: when i was a teenager getting into
: trouble feeling depressed and that i
: felt like there was no hope for me
: in this life. Know I have a
: beautiful son that I was blessed
: with he does have this disorder as
: well. I don't look at it as a
: negative thing but a learning curve
: in my life and in my son life's.
: Yes, there will be many ups &
: Down's and good time and in bad but
: no matter what it is important not
: to give up on your children
: regradless of what they have. I had
: also lost a still born baby when i
: was 21 and I was 7 & half months
: pergant it was so trageic to have
: lost the baby and i had always
: wondering why! Well, I'm sure that
: baby i had lost had serval problems
: that i didn't know about. I didn't
: know at the time that I had
: 22Q11deletion at the time. I thank
: God that my son know his okay! yes
: there will be challenge's but I wil
: help him through it. Oh bye the way
: he always a kidney defect. He's
: heart is okay! Just remember that
: yes this 22Q11deletion is frustating
: to deal with but just keep in mind
: they are your kids and to just keep
: on going!! Merry Christmas and Happy
: New Year! My e-mail is
: jonescampmuskoka2003@yahoo.ca I am
: very open so feel free to e-mail me!
:
: Megan Jones
:
: --Previous Message--
:
: --Previous Message--
: My third child was diagonosed with
: 22q11 deletion (DiGeorges). I knew
: she may have had a genetic disorder
: prior to birth since she had several
: heart defects.
:
: I have a 4 year old daughter and 2
: 1/2 year old son as well (neither
: have the disorder), and wondering if
: anyone else out there had troubles
: with pumping breast milk and dealing
: with insurance companies supplying
: materials for an NG tube (which she
: came home with from Johns Hopkins).
:
: We are awaiting for her next surgery
: but just wondering if anyone else
: has had older kids with a younger
: siblings.
:
: We have a 14 yr old son, a 11 yr old
: daughter, both typical. Our third
: child (a son) was born with 22q11,
: he's now 8. Would love to talk with
: someone in a similar position. Feel
: free to email me
:
: Aloha....We just found out after 15
: years that our oldest child (15) has
: VCFS. We also have 4 other children
: that was not affected. I would love
: to have someone who is dealing with
: this email me. Maybe I could be of
: some help also since my daughter is
: 15.
:
:
:
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